Análisis inferencial Tabla 9 - Variable (Y): Desempeño del personal

B. Variable (Y): Desempeño del personal

4.2. Análisis inferencial Tabla 9

João Biehl

“It is the financial part of life that tortures me”

I begin with a poem by João Cabral de Melo Neto (2005) on the people of Northeastern Brazil, one of the poorest regions in Latin America. João Cabral writes of people who are one with that inhospitable environment, yet with a unique fluidity that creates potential. The poet grew up there and it is there that I will take you in this chapter:

And from this indigent river, this blood-mud that meanders with its almost static march through sclerosis and cement and from the people who stagnate in the river’s mucus,

entire lives rotting one by one to death,

you can learn that the human being is always the best measure, and that the measure of the human is not death but life.

Life is in transit. This was certainly true for Evangivaldo. “What a joy you give me by coming back,” the 38 year-old man beamed as he saw me and photographer Torben Eskerod in December 2001 at Caasah, a community run AIDS hospice in Salvador. Considered by many “the African heart of Brazil,” Salvador is the capital of the state of Bahia. It has an estimated population of 2.5 million, with more than 40 percent of families – like Evangivaldo’s – living below the poverty line. I could barely recognize him. But the stark visual side effects of AIDS therapies were the least of Evangivaldo’s concerns. “Today I woke up anguished. We have no gas to cook with.”

We were happy to help him out and told Evangivaldo that we had been trying to reach him for three days but had the wrong address. “I already had to move four times. The neighbors discovered that we have AIDS,” he said. “When it was just Fátima and me we could improvise things, but now that we have a child it is another 1

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matter. We can go hungry but Juliana cannot. I always take my ARVs [antiretroviral drugs], even if I just have coffee in my stomach.” Evangivaldo explained that

“we did not plan to have a child. The condom broke. But now that she is here, I see that this is what I wanted most in life. I thought I would die. . .but now I have a fruit of the earth.” He paused and then added: “It is the financial part of life that tortures me.”

Via pharmaceuticals and at the mercy of a volatile economy, Evangivaldo and his loved ones lived in flux. Like millions of other poor AIDS patients worldwide who now have access to treatment, he struggled to move out of the stream of history and into a technologically -prolonged life. Scavenging for resources and care, Evangivaldo conveyed desperate and extraordinary efforts to swerve and exceed constraints of all kinds. As he drove to singularize out of economic death, he also expressed world-altering desires. This chapter is about Evangivaldo and the social fields that the new people of AIDS invent and live by. Their drives and doings upset

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probabilities, bias estimates, and expand the limits of what can be known and acted on in the new world/market of global health.

Model policy

Brazil accounts for 43 percent of all HIV/AIDS cases in Latin America. An estimated 730,000 Brazilians were living with HIV/AIDS in 2007 – an adult prevalence of 0.6 percent (Figures 5.1, 5.2). For about a decade, incidence has hovered between 20 and 25 per 100,000 for men and between 10 and 15 per 100,000 for women. But social epidemiological studies show considerable heterogeneity in HIV infection rates, with large numbers infected among vulnerable groups such as men who have sex with men, commercial sex workers and injecting drug users. Brazil is indeed known for its stark socio-economic inequalities and for its persistent development challenges. Yet, against all odds, Brazil invented a public way of treating AIDS.

In late 1996, groundbreaking legislation guaranteed universal access to anti-retroviral therapy (ART) (Figure 5.3). This policy resulted from potent rights-based social mobilization and novel public-private partnerships. The democratic Constitution of 1988 granted the right to health to all citizens and mandated the creation of a national healthcare system – AIDS activists were the first group to effectively equate this right to drug access. Some 200,000 Brazilians currently take antiretroviral drugs paid for by the government. The government managed to reduce treatment costs by promoting the production of generics. It also negotiated sub-stantial price reductions from pharmaceutical firms.

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1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 0

100,000 200,000 300,000 400,000 500,000 600,000 700,000 800,000

High estimate

Main estimate

Low estimate 900,000

1,000,000

Number of people living with HIV, Brazil

Figure 5.1

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1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 0

Men

Women 15

AIDS incidence, Brazil

Casesper100,000inhabitants

1999 2000 2001 2002 2003 2004 2005 2006 2007

0 200000 180000 160000 140000 120000 100000 80000 60000 40000 20000

Number of patients on ART, Brazil Figure 5.2

Figure 5.3

According to the Health Ministry both AIDS mortality and the use of AIDS-related hospital services fell by more than 50 percent (Figure 5.4). Perhaps even more impressive is the decline in mortality during the first year after diagnosis (Figure 5.5), signifying the transformation of HIV/AIDS from an acute to a chronic disease. Brazil’s bold, multi-actor, and large-scale therapeutic response to AIDS has made history (Figure 5.6). It empirically challenged the economic and medical orthodoxies that treating AIDS in resource-poor settings was infeasible and that poor patients could not adhere to these complex drug regimens – as a result, Brazil has been a leader in the struggle to universalize access to AIDS therapies.

Yet, I wondered, what would be the effects of the universal treatment policy on the country’s poorest and most marginalized citizens, among whom HIV/AIDS was spreading most rapidly. How would people such as Evangivaldo and Fátima transform a death sentence into a chronic disease? What social innovation could make such medical transformation possible?

Moving in the direction of the incomplete

For over ten years, I have explored the impact of the AIDS treatment rollout throughout the country’s government, health systems and personal lives. I inter-viewed policy makers and health professionals and carried out a long-term study of marginalized AIDS patients in Salvador. In charting the lives of poor patients before and after they had access to ARVs, I wanted to open a window into the real-life outcomes of novel national, international, and corporate policies (Biehl 1

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1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 0

Men

Women

AIDS mortality rate, Brazil

Deathsper100,000inhabitants

Figure 5.4

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Kenya South Africa

Uganda Brazil Chile Haiti India Thailand China 0

ART coverage among people with advanced HIV, 2006

Figure 5.6

1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

0 0.9

0.8

0.7

0.6

0.5

0.4

0.3

0.2

0.1

AIDS mortality in first year after diagnosis, Brazil

Figure 5.5

2007). Broadly speaking, I have been concerned with the arts of government that accompany economic globalization and the remaking of people as market segments (specifically, therapeutic markets). How do citizen-consumers draw from govern-ment and make it resourceful as they negotiate the vagaries of the market and survival? When and under what conditions are marginalized people accounted for as population-subjects in new biomedical regimes?

In my ethnographic work, I also engaged nongovernmental and pharmaceutical communities as they took up the call for responsibility and care in the face of AIDS.

Following the Brazilian lead, initiatives are being launched today, seeking to address AIDS therapeutically in places where treatments have been scarcely available.

Whereas in the past, the field of international public health was dominated by multilateral and bilateral organizations, a complex matrix of partnerships (non-governmental, philanthropic, industrial and governmental) has arisen and is shaping health interventions worldwide under the frame of security and humanitarianism (Fidler 2008) – the field of global AIDS treatment is paradigmatic of this trend.

Public-private partnerships in global health come in multiple forms and they have diverse interests. Ranging from the Gates Foundation, to corporate drug donation programs, to PEPFAR (the U.S. President’s Emergency Plan for AIDS Relief), to exemplary pilot projects such as those of Partners In Health in Haiti and Rwanda, these various actors have elastic relationships with each other. They set goals and new norms for institutional action and sometimes fill voids in places where national systems and markets are failing to address public health needs or have been absent altogether (Reich 2002). Whatever differences there are across corporate, activist, and public health agendas, the new rubric of “value” appears to reconcile these differences and folds them into an ethos of collective respon-sibility. Arguably, participants can become impervious to critique as they point to dire global health statistics and their non-optional duty to act (i.e. to partner, making treatment accessible and saving lives – see Sachs 2005; Singer 2009).

So far, few, if any, institutions are in place to monitor this burgeoning and somewhat disordered “public goods” field (Biehl 2008; Samsky 2009). In practice, the interests and concerns of donors, not recipients, tend to predominate and the operations of international organizations tend to reinforce existing and unequal power relations between countries (Banerjee 2005, 2007; Epstein 2007; Ferguson 2006; Ramiah and Reich 2005). Moreover, initiatives are increasingly dominated by scientifically based measures of evaluation, revolving around natural experi-ments, randomized controlled trials, statistical significance, and cost-effectiveness (Duflo et al. 2008; Todd and Wolpin 2006) – a technical rhetoric aligned with the demand of funding organizations for technical solutions. Traditional public health initiatives are now slated in the category of “non-science” and this “scientific preoccupation” tends to overlook the on-the-ground dynamics of programs, assuming that they will work in other settings, replete with distinct institutions, practices and rationalities (Adams 2008).

Indeed, much is side-stepped and remains unaccounted in this global form of experimentality and “post-politics” (Petryna 2009; Ecks 2005). How can donors be held accountable in the long-run, especially in this financially volatile time?

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How do global health trends affect the role of governments and their human rights obligations? Moreover, how are other deadly diseases of poverty that have less political backing being dealt with? Which projections and value systems under-score policy-decisions and medical triage? Problems and questions that were not necessarily known in advance and that now have to be addressed as life-saving imperatives have been converted into pharmaceutical and new geopolitical capital.

In his recent book Cold War, Deadly Fevers, historian Marcos Cueto (2007) documents the story behind the Malaria Eradication Program that played a crucial role in Mexico’s public health policy during the politically charged years of the Cold War era. While constantly keeping in view the campaign’s international political implications, Cueto’s detailed account of the way the eradication campaign unfolded on the ground leads him to unexpected anthropological terrains: he documents a profound disconnection between how the campaign was designed to work by the Rockefeller Foundation and elite national health experts, and the complex ways it was actually received by the indigenous residents of rural Mexico.

In rural communities, many families simply refused to let the DDT sprayers into their homes, and there were cases when spontaneous protest even bordered on the edge of armed violence. After the first several years, even people who had complied with earlier rounds of DDT spraying angrily noted that it worked less effectively every time, and that many insects already seemed to be developing resistance and growing bigger instead of dying off.

It was in this charged historical moment that medical anthropology emerged as an applied science. Anthropologist Isabel Kelly, a former Berkeley student of George Foster, began collaborating with Héctor García Manzanedo and the Mexican Health Secretariat on rural projects in 1953. As the pair began researching how the malaria eradication program was being received in indigenous com-munities, they conceived their roles to be those of listeners and cultural brokers.

Their report suggested many complex reasons why the program was not achieving its anticipated success, which stretched far beyond the already-underestimated language barriers. For example, the medical anthropologists’ report explored com-plex rotational housing patterns according to the seasons, meaning that families often seasonally abandoned the house that had been sprayed or preferred to simply sleep outside in the heat of summer. More fundamentally, indigenous communities often had their own healing systems and understandings of fever that coexisted uneasily with the public health information about malaria that the government distributed. And as the medical anthropologists ultimately pointed out, this environment of suspicion was underpinned by a fundamental difference in health priorities. In many communities, malaria was not conceived of as a major health problem or even a single disease, and many people in rural areas wondered why it was being addressed when their other more pressing health concerns were being ignored.

Cueto’s complex portrait captures the fact that this collision between local values and international public health agendas was hardly just a fluke or footnote in the history of Malaria Eradication – it was a key reason why the campaign ultimately failed. Without paying attention to how this intervention became embedded in local

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economies and politics, national health officials often treated social resistance as a communications problem in a population that needed to be educated, instead of reflecting on the structure of the intervention itself. The implications of these realities run deep for our health policies today. In 2007, the Gates Foundation revived the failed campaign, pledging to eradicate malaria from the world. A year earlier, the World Health Organization once again approved the spraying of houses as an appropriate part of malaria eradication. As Cueto notes, pyrethroid-soaked bednets and pharmaceuticals have become the technical fixes of a supposedly “new era,” the goal of malaria eradication now resurrected four decades after its original failure was declared in 1969 (see Bleakley 2009).

The fact is that magic-bullet approaches are increasingly the norm in global health – that is, the delivery of health technologies (usually new drugs or devices) that target one specific disease regardless of myriad societal, political and economic factors that influence health. Drawing from my study of the Brazilian therapeutic response to AIDS, this chapter explores the limits of the vertical-technical-fix approach in global health and the feasibility of “people-centered” initiatives. We need analytic frameworks and institutional capacities that move beyond the repetition of history and that focus on people: on-the-ground involvements that address the politics of both control and non-intervention, the fragmentation of efforts, the presence of heterogeneity, the personal and the interpersonal, people’s inventiveness.

It is time to attribute to the people we study and describe the kinds of complexities we acknowledge in ourselves, and to bring these complexities into the picture of global health. Policy and popular accounts tend to cast people as helpless victims, over-determined by environment, history, and power, or as miraculous survivors who bear witness to the success of external aid. Details are suspended. Broken institutions, rifts that deepen, and larger political economies in which these lives unravel seem peripheral to both analysis and activism. In the social sciences, methods such as randomized trials have been hailed as magic bullets in the quest for scientific evidence and for keys to unlocking the mysteries of health and development. People are put into pre-conceived molds. The human populations that constitute the subjects of health and development studies are not just the source of problems. Their practical knowledge may well yield effective solutions – experiential knowledge all too readily disqualified by sponsors of technical fixes in the search for quick results.

People’s everyday struggles and interpersonal dynamics exceed short-term experimental approaches and demand listening and long-term engagement (Biehl 2005; Scheper-Hughes 2008; Tsing 2004; Whitmarsh 2008). Anthropology’s task in the field of global health is to produce different kinds of evidence, approaching bold challenges such as the pharmaceuticalization of health care delivery and crucial questions such as what happens to citizenship when politics is reduced to survival – with a deep and dynamic sense of local worlds (Petryna et al. 2006). The anthro-pologist demarcates uncharted territories and tracks people moving through them.

In the field, the unexpected happens everyday and new causalities come into play.

An openness to the surprising and the deployment of categories that are important in human experience can make our science more realistic and hopefully better.

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“My politics is to see things humanly”

I first met Evangivaldo in 1997. Homeless and with contagious scabies, Evangivaldo had been sent from the AIDS ward of the state hospital to Caasah – one of the 500 Brazilian “houses of support” (casas de apoio) that helped poor AIDS patients navigate the precarious health system. Antiretrovirals were becoming available but public institutions were barely functioning and the government was increasingly outsourcing care to grassroots services. “I need to talk, to speak all truths,” I remember Evangivaldo saying through the door of a room that quarantined him:

“I have this sad psychosis in my head.”

Evangivaldo’s parents died when he was young, and he was raised by an uncle.

As a teenager, he moved to Salvador in the early 1980s: “I carried many sacks of flour on my back to buy my first pair of sandals, he said.

Later, I escorted prostitutes to the ships that docked here.” He was struggling to belong: “There are people here who think that they are superior because of

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the color of their skin, or because they have a doctor who likes them, or because they are in better health.

Caasah was founded in 1992, when a group of homeless AIDS patients squatted in an abandoned hospital formerly run by the Red Cross. Soon, Caasah became a nongovernmental organization (NGO) and began to receive funding from a World Bank loan disbursed through the Brazilian government. By the mid-1990s, the unruly patients in Caasah had been evicted and a smaller group underwent an intense program of resocialization run by psychologists and nurses.

“With time, we domesticated them,” recalled Celeste Gomes, Caasah’s director.

“They had no knowledge whatsoever. We showed them the importance of using medication. Now they have this conscience, and they fight for their lives.”

Evangivaldo was one of the few who got that chance. He and his fellow “AIDS citizens” (as many in Caasah called themselves) knew all too well that inequalities of power, ranging from economic destitution to racial discrimination, determined who had access to what services. They had to take up a new patient identity, and this newly learned ability to “accumulate” health at Caasah was also a highly competitive enterprise. “Did you ever see an AIDS patient in here hoping for the other’s well-being?” Evangivaldo asked me. In fact, residents were constantly pointing out each other’s faults and comparing clinical conditions. The other’s misbehavior or sickness was a measure of their own health progress. Money was also at stake. Caasah was facilitating application for AIDS disability pensions, and priority was given to those residents who showed change. People kept to 1

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45 Image 5.3 Caasah in the mid-1990s

themselves. As one patient told me: “One Luis has died and another has emerged.

I got used to the medication. Medication is me now. Today people only die from AIDS if they want to.” But Evangivaldo thought differently: “My politics is to see things humanly. The one who is strong now must help the weaker.” After a year in Caasah, Fátima came into his life, he said. “As I got better I told her ‘Like you,

In document ESCUELA DE POSGRADO (página 38-44)